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Muscle spasms in back

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User
Posted 04 Oct 2020 at 16:38

P is now getting painful muscle spasms in his back and round his ribs...it seems to relate to the stomach pain, in that it often follows wind building up. Cocodamol is sorting it at present. He's having a gastroscopy tomorrow, hopefully that will tell us more. His calcium is also slightly raised. I'm finding it very hard to cope with him being in pain, and neither of us are getting enough sleep. I find it hard to know what to do...he's seeing the GP on Tues...should these symptoms be reported to the specialist nurse? P is reluctant to do so - I'm scared it could relate to spinal compression - and I'm getting to my wit's end with it all.

User
Posted 05 Oct 2020 at 07:08

Artyfriend


Hope the gastroscopy goes as well as they can. Tell him, if he doesn't let his medical team what is happening they can't help him. 


Thanks Chris

User
Posted 05 Oct 2020 at 22:52

Talk to the nurse.   Nurses are used to people thinking every pain is associated with the worst outcome and the vast majority aren't associated.   So the nurse told me when I told her my fears about a pain in my hip just after my diagnosis.   The consultant said the same so about 2 months later I went to my GP and he said it was arthritis. 


I also worried about telling them before the op in case I needed another bone scan and it upgraded the diagnosis.  If he's already on hormones they can offer some additional treatment that will be worth having so I'd recommend you tell her.


Regards
Peter

User
Posted 06 Oct 2020 at 20:49

Hi,  When you mention bone thinning and raised calcium it seems a bit contradictory to me.  Not that I know much about it but I thought bone thinning was related to lack of calcium.   There is something about taking Vitamin D3 and bone strength that might be worth reading up on.


Just having looked up bone thinning, osteoporosis, it says hormone related conditions although not sure if it means hormone treatment.   Vitamin D3 is some kind of hormone. 


Good that your stress has gone down.  I found there were days when I woke up when I knew I was going to be chewing the cud all day.   The day after it'd be better.


Regards
Peter

User
Posted 06 Oct 2020 at 21:42
Peter, this is not necessarily relevant to Artyfriend but raised calcium in the blood can indicate active bone mets.

Arty, a few years ago, most men on long term HT with significant bone mets were given Zometa (a bisphosphonate) to reduce the risk of bone thinning. I am not sure why it isn't routine any more - perhaps cost but more likely that the side effects can be quite significant? If they do recommend Zometa for your OH, ask the nurse or GP whether you should arrange a dental appointment before he starts.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 05 Oct 2020 at 07:08

Artyfriend


Hope the gastroscopy goes as well as they can. Tell him, if he doesn't let his medical team what is happening they can't help him. 


Thanks Chris

User
Posted 05 Oct 2020 at 22:52

Talk to the nurse.   Nurses are used to people thinking every pain is associated with the worst outcome and the vast majority aren't associated.   So the nurse told me when I told her my fears about a pain in my hip just after my diagnosis.   The consultant said the same so about 2 months later I went to my GP and he said it was arthritis. 


I also worried about telling them before the op in case I needed another bone scan and it upgraded the diagnosis.  If he's already on hormones they can offer some additional treatment that will be worth having so I'd recommend you tell her.


Regards
Peter

User
Posted 06 Oct 2020 at 12:21

He had the gastroscopy, and there was no ulcer but a small hiatus hernia. So we're wondering if the back pain is separate from the indigestion.....and so maybe does have something to do with his bones. We see the GP this afternoon, and P is going to ring the oncology nurse tomorrow - her last written report did mention the possibility of bisphosphonates "in future", so maybe it does relate to bone thinning. He has more bloods for oncology on Monday, so we'll know what the calcium level is doing. 


And I've realised I do probably need more support myself - I've calmed down a lot since yesterday, when I spoke to one of the specialist nurses here and to the Macmillan support people. Bottling it all up really isn't the way to deal with it!

Edited by member 06 Oct 2020 at 12:23  | Reason: An afterthought.

User
Posted 06 Oct 2020 at 19:15

GP now reckons, having excluded an ulcer, that the back pain most likely relates to either the enzalutamide or the raised calcium and is going to chase up oncology, who haven't replied to his previous letter. And P is going to raise it with the specialist nurse, in the hopes of getting things moving. She has mentioned the possibility of bisphosphonates previously, and the GP says if he gets no answer he'll start them anyway.

User
Posted 06 Oct 2020 at 20:49

Hi,  When you mention bone thinning and raised calcium it seems a bit contradictory to me.  Not that I know much about it but I thought bone thinning was related to lack of calcium.   There is something about taking Vitamin D3 and bone strength that might be worth reading up on.


Just having looked up bone thinning, osteoporosis, it says hormone related conditions although not sure if it means hormone treatment.   Vitamin D3 is some kind of hormone. 


Good that your stress has gone down.  I found there were days when I woke up when I knew I was going to be chewing the cud all day.   The day after it'd be better.


Regards
Peter

User
Posted 06 Oct 2020 at 21:42
Peter, this is not necessarily relevant to Artyfriend but raised calcium in the blood can indicate active bone mets.

Arty, a few years ago, most men on long term HT with significant bone mets were given Zometa (a bisphosphonate) to reduce the risk of bone thinning. I am not sure why it isn't routine any more - perhaps cost but more likely that the side effects can be quite significant? If they do recommend Zometa for your OH, ask the nurse or GP whether you should arrange a dental appointment before he starts.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Oct 2020 at 13:47

P has been in touch with the specialist nurse today about this - having been woken with back pain about 3 am despite having had his cocodamol - and she's going to contact the consultant and get a message back as to whether they want P to have either another CT or an MRI. We know he has mets in his spine/pelvis....the last CT in August was "no change", but it's since then that the calcium has risen and the back pain has become a problem. I was worried about spinal cord compression, but they think probably not. They're also looking into better pain relief - he's only needed that during the past week, so whatever's going on is getting worse.....I did see, looking at drug interactions, that enzalutamide does reduce the effectiveness of codeine, so maybe something other than cocodamol is called for.

User
Posted 08 Oct 2020 at 18:31

P saw the oncology specialist nurse today, to look into the worsening back pain - she doesn't reckon MSCC is likely, but wants an MRI sometime soon. Has switched him from cocodamol to morphine - more effective, we hope, but perhaps a worrying development? She brought up his bone scan from January, which we'd never seen - just told it was "positive" - looked very extensive mets to me, including in his ribs which we didn't know. Since then he's been full of wind and stomach pain, which we think might relate to constipation - we've had an ambulance out to check, that's what they reckon. I'm utterly shattered, had no sleep last night, and the stress is really getting to me.

 
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